Tuesday, August 5, 2008

e-Patients: How they can help us heal healthcare, chapter 1

Regular readers know I often speak of "e-Patients: how they can help us heal healthcare," aka "the e-Patient White Paper." I urge people to read it, but at 126 pages, it takes a commitment.

So I'm going to serialize it into seven chapter summaries, in the form of seven blog posts. Here's the first.

e-Patients: How they can help us heal healthcare

Published in 2007 by the e-Patient Scholars Working Group,
completing the life work of Dr. Tom Ferguson

"[People] are suddenly nomadic gatherers of knowledge...

informed as never before...
involved in the social process as never before...
[as] we extend our central nervous system globally..."
--Marshall McLuhan, 1964 <==wow

Chapter 1: Hunters and Gatherers of Medical Information

This chapter lays the foundation for the body of the book, opening with two compelling stories of what we might today call "e-patient pioneers" - those individuals who, with no precedent, took matters into their own hands, embodying the e-patient idea that they (and you and I) have every right to know everything they can about their health - and sometimes they might even do a better job than the doctors.

  • Edward Murphy's incredible story of trying to get information about his condition - he had to impersonate his doctor (1994)

  • "An unusual sloshing sound inside her head": Marian Sandmaier diagnoses her daughter's severe headaches, when two specialists had failed to (1999)

  • Turning to Dr. Google: research from the Pew Center for the Internet & American Life, documenting that patient googling is now dominant: the great majority of Internet users look for medical information. (That seems obvious today, but it was radical and almost verboten when Tom Ferguson started his work.)

  • Three types of e-patients - the well, the newly diagnosed, and the chronically ill - and more Pew research on the different ways they use the Internet

  • "The Accepting, the Informed, the Involved, and the In Control": an intriguing way of viewing different people's Internet use based on their attitudes and how deeply in trouble they are.

In that last section, check out Group IV: "...believe in making their own medical choices... will often insist on managing their own medical tests and treatments as they think best... may attempt to help to keep their clinicians up to date on new treatments and studies.... may start, manage, or contribute to local support groups, online communities, blogs... " My my, which group am I in? :)

Content, Connectivity, and Communityware - seven preliminary conclusions

1 comment:

  1. Thanks, Dave! I was the editor of that chapter and you've done a great job summarizing it. On my to-do list is to contact each of the people Tom featured to see how their views and experiences have changed (or not) in the last few years. Another item on my to-do list is to upload the latest Pew Internet Project data to the wiki version. For people who can't wait, check out our health reports and the very latest data.


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